Monday, November 25, 2013


What is it about being diagnosed with a chronic disease that makes us all think we have to be stoic, not let anyone know that we're in pain and suffering and that we are still a "superwoman"? What is it that seems to make us think we can't tell our loved ones if we're having a bad day? This does seem to be something that manifests more in women than men, but if the shoe fits then this is for all who feel this way. I talk to so many patients who are always telling me how guilty they feel that they can't do what they used to; that they feel they are not a good mother or daughter or wife - you name it - but I find a lot the women I talk to have these feelings and look upon becoming sick with IC as some sort of personal failing.

Nothing could be further from the truth! If your spouse, parent, sibling or other loved one had been the one diagnosed with a chronic, painful, incurable disease would you think less of them? Probably not. I think most of us would want to help support that person, ask what we could do to help, let them know we are there for them. Offer to do whatever we could.

But for some reason, so many of us seem to take our diagnosis, and how it impacts out lives and changes what we can or cannot do and look upon ourselves as flawed and somehow weak and beat ourselves up because we didn't get the house cleaned to the perfection we used to, or we can't host Thanksgiving like we once did.

It's a process, but I think it's important to say that getting sick isn't a personality flaw! You are NOT weak because you can't do what you once could. It's OK to experience feelings of loss over the changes we have to make to accommodate our illness. But working through those feelings is important and leaning on our loved ones is something we should walk toward not away from.

I realize not everyone has the perfect, supportive friends and even family. But seek the people who DO support you. Ask for their help if you need it. Think about why you think being sick makes you "less than" you were before. 

I guarantee you, no one ever lay on their death bed wishing they had spent more time cleaning their house. But they do wish they had spent more time with those they love. Even if you can't run around the yard with your children anymore, spending time with them is what they will remember. Just being with you; doing quiet activities is important. They will remember you were there for them when they are adults. And, in the process, I believe you will have taught your children to be caring, empathetic adults who will be there for those they love because you taught them how to do this as they grew up.

Hiding how much pain you are in from family and friends isn't a sign of strength and serves no purpose. You don't have to make a huge deal out of not feeling good. But let's say you are at a party or family gathering (those will be popping up starting this week). If you are asked how you are feeling, simply state you are not feeling well but you prefer not to dwell on it. Ask if that person is willing to go sit with you in a comfortable place and visit with you and distract you from your discomfort; tell them this will lift your spirits. How many people would actually say No to a request like that? Then re-direct the conversation to them, their family, what they've been up to. If they want to ask more about your IC, tell them what they want to know but keep it simple and don't monopolize the conversation with it. I always give myself a cut off point before I pivot the conversation back to the other person.

I find this works well for helping to lift my spirits, as I mentioned. I love hearing about my friends, what they are doing, their work, family etc. The ones who have stuck by me are the ones that truly understand my situation and always ask about me. I tell them, but don't dwell and move the conversation along after bringing them up to date.

It's not weak to admit you are in pain. In fact I think it takes a lot of bravery to show others that we do need help, love and support to get us through our struggles. No one should ever feel guilty for getting sick. So as we approach this Thanksgiving and the upcoming holiday season, I want to encourage everyone to change their expectations of themselves. Don't feel you have to do what you've always done. If you need to change the plan, whatever that may be, to accommodate your physical needs, then do it. Ask for the support you need. Let family know you want to BE with them; that's what we want most. Just time with those we love. It's not about being Martha Stewart. It's about spending time with loved ones and not being afraid to ask for help when we need it.

You are not weak if you admit you are in pain. You are you. You are still the person your family loved before and that hasn't changed! I think living with chronic pain is brave and every single one of us needs to give ourselves more credit than we do! We are stronger than we know and asking for help doesn't make us weak!


  1. Hi Catherine. I read your story and wanted someone to talk to. My name is Threasa. I have been in pain since April of this year. I was told I had kidney stones. I was told they were 9 & 10 mm and I would pass them. When I started having the pain it was in my back and my bladder. It was so bad I missed two weeks of work. I couldn't get out of bed without help. A month went by and I still had pain. So I went to the er and I was told the kidney stones had moved to my ureters and i would pass them in the next couple of days. Three weeks went by and nothing!! I decided to go back to the er and they told me there was no kidney stones. They said that if I did have them that they disappeared. I was so confused and frustrated. I went back to my doctor and he said he didn't know what was wrong. I was not going to just take that so I decided to switch doctors. I finally met him in June. He did a urinalysis and said that I had an infection. He put me on antibiotics. I went to see him every two weeks and my urinalysis kept getting worse. In September i had a cystoscopy with hydrodistension under general anesthesia. A few weeks after I was still in pain. I finally went to see the urologist this month and he finally diagnosed me with IC. He is scheduling me for bladder instillations for six weeks and see how I do with them and after I'm done I will be put on the IC medication. My family does not understand what I'm going through and they are not taking my illness seriously. I'm still in pain and I am constantly urinating and I have leakage. It's so embarrassing for me. It's affecting my job and my social life. All I want to do is stay home. I really need some advice I don't know what to do.

    1. Threasa; I am sorry you have been in so much pain and have had such a hard time getting a diagnosis. It does sound as though you finally have a proper diagnosis and the treatment plan sounds like the right place to start. I do instillations for my pain and they help me a lot. Some patients need more than that and some need a referral to a Qualified Pain Management Specialist. But I would try the medication and instillations and see how you do. Unfortunately, IC treatment is often trial and error. Most of us go through multiple treatment options before we find the right combination - yes often it takes multiple treatments - that works for us.

      As for your family, do your best to educate them. Share my Blog with them. Go to the ICA website and show them information on IC

      Ask at least one member who you feel closest to, to sit with you while you explain IC to them. Ask someone to go with you to a doctor appointment. We suggest that a lot in my local Support Group and find when family/spouses etc. go to a doctor appointment it is often eye opening.

      In addition, one of the most reputable medical organizations with doctors that treat IC, the American Urological Association (AUA) just did a Cover Story in their Global Connections Magazine Fall 2013 edition on IC. I am quoted in the article. This is REAL disease and many of us - myself included - are on Disability due to the severity of our IC symptoms.

      One of the most important things I believe a patient can do is to become as educated about IC as you can. Read everything. Go to the ICA website and take the time to read through all the different sections. I think it’s key to read the New AUA Guidelines on the Diagnosis & Treatment of IC. Read them, highlight areas you think are important and use it as a tool to discuss with your care with your doctor. I’ll post some links.

      Feel free to message me with questions.